 So I know that one of Barb's hopes in inviting us all is that we would draw from each other And I can't tell you how beneficial today has been for me So if this feels like I've echoed everything that we've already talked about today It's as if you've written my slides for me So I'm going home a happy camper knowing that other people think the same way I do so For ten years I practiced at a large university setting in Western New York where we were the only show in town So if you needed genetic services, you came to me You saw me in the prenatal clinic. You saw me in the pediatric clinic. You saw me craniofacial team You saw me cancer and then two years ago I had this wild idea that I was going to leave a place that nobody ever left and I'm sort of glad I didn't know What I was getting into because I would have run the other way I am the sole genetics provider at an incredibly large Radiology clinic now when I start to tell you numbers It will blow your mind the number of people who are in line to see me And so as we've talked today, I think a couple of things have been helpful The first thing where Colleen said who needs my face and who needs my brain That's something that is just on my mind every single moment And when Laurie said well, do they need the genetic counselor or can some other technology? You know sort of take over so I may not have a ton of research to present But I would love to have you tell me what research questions you have Because after two years in this position, we have now gotten past the stage of I'm just dory and survive I'm swimming through my patients every day and now I have the go-ahead to say we've got enough control That we're gonna start researching these hundreds of thousands of patients a year So anybody wants to collaborate and come where it's cold. Let me know so We see the slide all the time But what I'm thinking about when I see this is when I was practicing in a university setting There was already some triaging happening the primary care physician the gyn Whomever thought they were a good candidate you plop me in the middle of a radiology clinic where everybody is just their general Population there's not a lot of triaging happening And so that's where the role of the genetic counselor has come into place is that many people don't want to go into that big Bad university setting for their genetic counseling. They wanted to bring the genetic counseling to the patient But it's created a huge numbers problem. So I work at Elizabeth Wendy breast care Which since 1975 has been this internationally recognized radiology center It is the largest freestanding breast imaging center in New York state definitely and in the US we see 200,000 patients a year like a fine-oiled machine It's shocking come in for their yearly mammograms their yearly ultrasounds and their yearly MRIs now if I'm being incredibly honest The reason that a radiologist said a genetic counselor is a good idea is the downstream revenue of an MRI right within their building So let's just get that right out there that that that was an important part of them So they're classified as a breast imaging center of excellence and there are seven bosses who decide what I'm going to do And what patients I'm going to see we have four campuses in and around Rochester I am housed at the main campus where we offer the following services digital mammography 3d digital mammography ultrasound MRI biopsies on-site bone density my favorite massage and then me cancer risk assessment and genetic counseling So today Generally, I just wanted to kind of say what are the benefits and limitations of being in that setting It often blows my mind how many people have really never heard of genetics I sit there and I kind of cock my head and go no one's ever brought this up to you before and then to just sort of say What are the beginning statistics? What have we seen within the first two years of implementation of this program? And then I would love honest to goodness to make my gray hair go away What are some ways that we could change the method in the protocol? Can I use that iPad that video that patient portal something that doesn't require my face and my brain because I can't do it And when you see how few patients I'm actually seeing in comparison to the volume Hiring a lot more genetic counselors isn't the key if we're only going to be little pieces of the puzzle So their initial program what they call the genetic counseling program began in 2009 It was an MRI nurse and a medical assistant who went for a little bit of training and we're told okay We're gonna have you order genetic testing specifically. They saw less than 25 patients within the year They did not do a great job and they still work there And they tell me they didn't do a great job of record keeping even knowing what they were talking about if they got a Positive they sent them over to me at strong where I did the counseling so they were just sort of haphazardly doing it In 2011 they hired a genetic counselor Who bumped the program up to about 200 patients per year now when I give you numbers in a minute You'll see how that's still very very small But what they did is at check-in when the patient walked in and filled out their health history form They took a little bit of family history and if that person was identified as quote-unquote high-risk They could see the genetic counselor. So it was based on a point system I can't get my brain back around how this was the best tool that they came up with But they did a point system where if you had two or more risk factors You were generated as high-risk and you got a high-risk letter the point system looked like this One point if you had any family member with ovarian cancer One point if you had a personal history of breast cancer after the age of 50 Two points if you were personally diagnosed before 50 and if you were Ashkenazi Jewish you got one point You can see there are so many holes with this and so many different ways What if there's a personal history of ovarian cancer you're completely missed, but they were attempting and they were trying the counselor that Created the system left after a year and lo and behold this position opened and I came in not knowing What a big deal this was going to be so in 2012 I started as the director of this program No staff. I answered my own phone. I made my own appointments I did all of those sorts of things and very quickly went. Hmm. This is bigger than that. So genetic counselor led expected to see nearly 1000 patients a year which is about 20 a week which isn't terrible in the grand scheme of things except It's only a drop in the bucket. So all patients continued to be actively screened at check-in We just started to do a better job of identifying who needed me and I'll show you pictures or The rubric in a minute, but the end of their session and this is the primary thing that I want to talk about It's a very passive aggressive The assistant tells you your mammogram for today was normal and oh by the way you answered some questions that tell us your High-risk if you want to here's the card for Jessica Here's her phone number caller if you'd like to make an appointment and that's stemmed a lot from a huge pushback from the Primary care physicians and gyns. Who are you to tell us that our patients are high-risk? They had a lot of issue with this, but the office decided we're going to identify you as high-risk We're going to tell your primary care physician and gyn that we identified you as high-risk This is the better implementation, but it's still a work in progress It's literally just lifting ncc and guidelines and if a patient answers Yes to any of those questions even one of them. They are deemed as high-risk now This is the blow your mind part of it Daily weekly monthly yearly the number of patients that come through the building daily is 500 per day for a mammogram It goes all the way up to a hundred and twenty thousand a year for mammogram The second column is the number of those that are flagged as high-risk and get my phone number 30,000 patients a year 30,000 patients a year Right now we have about a 25% flagged as high-risk that's too broad So we're working to make that smaller But right now the way we fish the pond to call people high risk It's 25% of patients if I'm only counseling five to eight patients a day, which is still up to 1,200 a Year I'm only affecting 5% or seeing 5% of the patients who call me less than 1% of the patients in the building who are called high risk So I sat with my radiologist recently and I said well even if we hired 20 more counselors We're still only going to see less than 20% of the patients We don't have an effective way in this system to capture all of those individuals I'm probably going to go off my slides separate from what I described last night simply because we've had such interesting Conversation, but here's the idea 25% of patients are identified as high-risk It's way too many right now the criteria is too broad But it also may not be capturing all of the right people affected versus unaffected patients And less than 10% of the patients are calling the genetic counseling and cancer risk assessment office I want to pause for a minute and say we were kind of talking about cancer risk assessment versus testing My experience is the exact opposite I am there for the purpose of a risk assessment of a tire acusic Who needs a management change to go get an MRI for my office? The testing is very secondary and I actually like that very much because they're coming for a risk assessment where the testing is really You know the sub-conversation that's happening Why aren't more people calling us and that's where I wrote Jillian's little slide down of is it because they're unaware Unengaged or they actively saying no and that's something that I've been trying to put words to so thank you for doing that There's a huge percentage of people who aren't calling and aren't coming in and why and I'll talk to what we've tried to do to up those efforts So why aren't they calling? What are the barriers? I've had more than one patient say to me They handed me a piece of paper told me everything was normal And I never even really read that I was high risk because it's just somebody handing them a piece of paper So in our office, we've done training for the actual medical assistant who's handing the paper that if you spend 30 seconds And have a conversation more than one patient said I threw my gum in it and put it in my purse I mean they weren't actually reading it and some people because they get it yearly every single time they come for an appointment Said oh you really meant it after you gave me the third one of those So they're calling years after the fact not right at the beginning and then should we actually be more proactive This is what I've spent the last six months talking about instead of just a piece of paper Should we do something where we're on the floor and at the time of their mammogram go down and offer a conversation You know today you had this high-risk category identified if you're interested we could talk to you about it while you're here We have a beautiful center where patients are there for three hours They're drinking tea and watching TV and doing all sorts of things as they're waiting for their results There's lots of pockets of time where myself or somebody trained could do consent could talk to them could do the tire Acusic during that timeframe. We are entertaining the idea of a waiting room with a monitor That has a little video of me talking five ten minutes of conversation A iPad you know bought for the waiting rooms where they can work their way through a tutorial So we're talking but we don't have an answer yet because 30,000 people have my phone number So we entered this idea of what I decided was essentially Group counseling, but I called it something else So I called it a monthly community lecture at the bottom of that high-risk lecture or high-risk letter Instead of call Jess and make an appointment. Hey, the next monthly meeting is at this time So it says for additional information Please consider attending one of these upcoming community lectures where our counselor is going to talk to you about this These have been raving successes We wanted to just for intimacy and conversation and I'm one person in a waiting room kind of having this conversation Keep it to about 25 to 30 people each time We've been averaging 50 per time and my secretary stay we closed down our entire lobby on a Monday evening once a month Patients sign up. They don't pay anything But they sign up just so that we have some accountability when they get there they check in I Lecture for 30 to 40 minutes on services what it is what I was hoping to do Was to weed out people that were getting the high-risk letter that didn't necessarily need me Instead what it's attracting is the people who need me the most and we're afraid to make that appointment So we've just started surveying those patients I don't have anything to tell you about it yet, but we've sent out surveys to each of them sort of saying What was helpful? Why didn't you come to counseling beforehand? What made you think that this was a better, you know atmosphere that kind of thing and at the end There's my staff my secretaries my assistants within takes willing to schedule people willing to take a family history willing to do this the risk assessment or the Tyra Cusick on the spot and sadly more than 95 percent of those people then make an appointment So it's not doing what I hoped it was going to do at all But I feel like they're better educated when they come in Interestingly, and this is where I'm going off the slides for a minute. I wrote myself some notes throughout today My time with each patient has gone down since I started the community lecture and since we've gone to panels We have this very thing very fancy thing called a dashboard where we have to keep track of 500 people in a day So literally they're moved throughout a screen telling you where they are in the bathroom They go to the bathroom if they're changing if they're doing this wherever they're going well It tells how long they're in a room with me So when I go to a waiting room and grab them I move them on the dashboard and say in with the genetic counselor So I have to the second how long I'm spending with individuals where it was closer to an hour before now It's that 35 40 minute mark So we're seeing my time frame come down because they've had some education ahead of time Which has been really interesting So again, if I'm thinking through on a nutshell 25 percent of our patients are high risk less than 10 percent are actually calling me of that 25 percent And should I be reaching out? This is where I've likened myself to Dory I don't have time to reach out to the individuals and the way I've sort of Solidified it for myself is that that starfish analogy right that I've sort of made a difference to that one and made a difference to that one I don't know how many more people we can fit within our protocol A couple of our doctors Have started thinking through Do they need to have me up front? Do you need to have me as a beginning part of the conversation and the consenting? Or is there ability to Have other individuals so one of the things that we've come up with with the help of some project managers and things Is this idea of a future workflow where while they're there? And they're gowned and they're waiting for their mammogram results or something through that process Could somebody approach them at that point in person instead of the piece of paper And what would that do to our uptake rates and those kinds of things? So this is just one idea um From 2011 to 2013 96,389 Health history forms were completed 24,000 were identified as high risk and 1,088 of them were actually seen So we're only getting about four percent of our patient population Seen in those 1,088 genetic counseling visits 80 percent of them pursue genetic testing And this is a highly motivated highly educated. They came in knowing There's very few people that are actually going to take the time to call me to make an appointment if they're not going to test Most of the time that 20 percent that didn't test I see large amounts of families together. We have a Easily four-hour geographic radius that come to our center So it's often moms daughter sisters group counseling. So even though it's 1,088 visits That's build visits. Lots of other people would have been present and part of the counseling Um, 664 were negative Those are the people I want to talk about for a minute because if I take those 664 of them go to the bottom here 464 of them were still eligible for MRI and that was the point of putting me within the genetic count or within the Um Radiology center was there are so many of our patients who still need to go on and get screening So we were able to track of those 464 how many went downstairs and actually had an MRI at that six month mark At that very first MRI six months after seeing me 54 of them had breast biopsies and 14 cancers were diagnosed right then at that very first visit To the radiologist that's so incredibly important because if they hadn't had that intervening Um appointment with me would they have gone on for an MRI? The other way that we thought about it is we did a retrospective review of two years worth of charts Of those 26,104 patients who were classified as high risk 2,149 of them came for counseling which was up to that 8 They can track that to when I came on board and the volume went up So we had a little bit higher reach rate if you will But what I am so interested in is why did 92 of them not do a thing? And going back to Jillian's idea they didn't know about it They didn't pay attention or it was an active. I don't want this service For some of the individuals were not actively capturing that they were seen elsewhere They could have gone to strong had the testing and just never reported it on that health history form And that's happened quite a bit And so we reviewed so far about 1800 charts of people who did not See me did not make any contact with genetics at all We're just trying to read into what's happening with them and we matched them to people who had seen me So we've got 1800 and 1800 There were 194 cancer diagnoses about 10 within that first two years So they got a point that was your diet. You are high risk Didn't see me and in those two years were diagnosed with cancer So we're trying to create something where we can interview some of those patients about what was it Um Ultimately what was interesting is how many of them had received the high risk letter one time versus two times versus three times There were patients that kept getting that information over and over and over again Um And then really interestingly and i'll stop here because i'm over my time We started to look at the pathology of it what percentage were invasive versus what grades they were Against other patients within our building as well And so patients would sought genetic counseling and had an MRI had earlier Diagnoses obviously than patients who hadn't gone and had that MRI in between So my real question is how do I keep up with this many people? Using technology to my benefit because they're not going to get my face and my brain and my mind all of them tired good Any questions for me you can think of um So being from the same area i kind of understand the patient population you're dealing with in the the catchment area is huge for Rochester um Do you get a lot of phone calls that you end up sending people to other places? Because that's why I knew where you worked is when you said sarah q's i said i know who you work for yes So um we get a lot of it has to do with insurance. We have a very odd insurance seen in rochester And excelus is one of those providers that makes it very difficult for us to test an unaffected patient When they're affected family member is alive. Not just did you appropriately counsel this person? but we must show documentation of estrangement or Refuse testing or insurance didn't cover for that affected relative And so we go to a lot of links to connect whole families, which is why they get referred to you as we're trying to figure that stuff out yeah Sorry if I missed this but for the I think it was 464 who needed an mri How many of them went for the mri? I saw the biopsy, but 464 I don't know if I have the number right this minute. It was 300 and something some 300 Because we have a tracking system with sort of a reminder That says this was recommended to you And then they check in about a month in advance if they haven't booked that mri yet With a just a friendly call of you should you know be booking this if you haven't But I mean that's a great example of what we've been talking about all day, which is a health behavior outcome based on genetic counseling Right, especially for the subgroup of people who did not need a genetic test or did not have genetic testing like You could just publish that and that would be extremely useful And we have an electronic medical record and a patient portal So every health history form for the last 20 years is part of it We have how they're reporting their family histories. What appointments they've been doing, you know The timing of those so we have all of that information. It's just how to troll it and get it and Make sense of it So I have a oh, sorry Go ahead No, I was just going to ask because you made the comment that you got a lot of pushback from the referring providers About putting that high risk Do you think that that has anything to do with some of the people not falling up at the person that's referring them? Absolutely saying well, maybe that's not really important for you Absolutely, because one of the things that we have two copies of the letter one that's in Physicians speak and one that is patient specific and we will often get a phone call from the patient Because the patient can opt out if they don't want to be called high risk or be To continue to get that high risk letter They can call our office and say please don't put me in that pool or notify me of my risk anymore And one of the things we ask is why and they will say my physician does not think I'm a candidate And at that point it's a conversation with a secretary, right of them saying my Yes In the last few months, we've started this program called the lunch and learn where I go into the obgym's office and just At lunchtime walk through and talk through why we're referring what we're doing. We do a lot of cases with them I'll go through cases from their own practice. Here's how when they came us ordering this This is what happened and we have all that data by referring physician So rob rested did a blog post about the angelina jolly effect and I was I was wondering if that Clear it and break you but my goodness I did not work the day that angelina jolly's story came out I was at home folding laundry and thought darn the sexiest day to be a genetic counselor and I'm not at work And my research question is whether it's for you or for the group If you were going to recontact those individuals who are diagnosed to sort out what may have led them to Not pursue the services. This is where the line of if you're conducting research and what kind of approval does that need versus You're just doing sort of a quality assurance for your employer I I would love some clarification about that and I just want to add one little asterisk to that Which is we have a huge cohort of people who had integrated BRAC analysis only and now there's a panel and our discussion is How many of those people do I recontact and say there's more testing? Do you want to come in and that's created a big issue for us right now And matt I feel like somebody should address your question a little bit I you should you should definitely if you're having questions that are IRB related talk to your IRB in your in your hospital But generally speaking so if you're want to if you want to do something for quality improvement And you're not planning to publish it and you don't intend for it to be generalizable You don't have to go through an IRB But if you think that the knowledge is generalizable you think you can do this and other people can learn from it And you want to publish it the IRB usually wants to see it. So that's sort of at least that's how the hopkins IRB Makes the distinction between research and not research But but practically the health system especially learning health systems are doing an enormous amount of quality improvement Research that they're publishing now. So Hopkins I think is a holdout a lot of learning health systems are just they just do it